My surgery has been called off for a fifth time, only this go around I was only feet away from the operating room.
I have reached the end of my rope. This will be long so I don’t have to explain to friends and family what happened 100 times.
A big thanks to the support and love, both online and from friends and family. I’d never be as strong as I am without you all, and I am so very grateful.
I arrived at the hospital as planned, everything was fine. I checked in like I have five times before (I know all of the staff by now, even the registration staff…). My rheumatoid arthritis/Still’s always throws my nurses and team of doctor’s off and I spent a good half hour answering questions about my joints and whatnot. Turns out the nurse in charge of my case has Lupus and I am so grateful to have her as my advocate through this surgery. I’ve never met anyone in the same/similar situation in real life, so it was nice to talk to someone both in the health care field and someone taking care of me that understood. Nurse K will be receiving a thank you gift, that’s for sure.
My team of doctors consists of a neurology team to monitor my nerves and to test motor functions/nerve conduction with electrodes placed into my head; a small anesthesiology team for pain management and sedation; Dr. J and Dr. C, Dr. J being chief of staff and my main surgeon and Dr. C being his partner (he is a spinal orthopedist like Dr. J); and finally Dr. D.
I met Doctor D a few months ago. He is a general thoracic surgeon with an excellent reputation for his surgical skills and an horrible reputation for his bedside manner. He lived up to his reputation. I need his skills because I will have a rod removed through my chest (procedure called a thoracotomy— google it) and because of my organs, ribs, and inflammation, Dr. J wants only the best to dissect my chest and create a path for the front rod to be removed. Understandable? Definitely.
Well Doctor D. decided that this surgery would not fix my spine (he’s not a spine surgeon…) and has consistently told me to lose 20lbs and to try alternative therapies, disregarding the fact that prior to this whole ordeal I was 30lbs lighter and I have tried everything from acupuncture to epidural injections. He had the audacity to come into the room while I was getting an IV, signing a living well, and being bombarded by about five people all asking me questions while being poked to tell me that the surgery was likely not going to be successful and I should be alarmed, blah blah blah.
I have a thick skin. His words had no effect on my decision, but shit they pissed me off. I literally stopped paying attention to his ego-inflating speech and he left, obviously aware of my irritation. I can’t even imagine the way he must terrify parents and young children.
I have a difficult time with IV’s in my hands. I don’t have a fear of needles and then don’t bother me anywhere other than my hands, but because my joints are so swollen and inflamed, any needle stick or bruise sets off excruciating pain from my fingers to shoulders. Originally they were going to take me into the OR, gas me to sleep (that sounds bad), and then insert two large IV catheters. But I was shaking by the time I got there and couldn’t calm down. I sucked it up and they started a line to give me a sedative. Only thirty minutes after getting the IV and after the time surgery was scheduled for, I had no sedative and things were feeling off.
I had a gut feeling the surgery was going to be canceled.
When hardware is removed from the body the surgeon has to know exactly what type of rods/screws/bolts are in your body— who made them, the serial number on each piece of metal, what type of metal, what tools they need to remove each piece. It’s a big ordeal and a tremendous undertaking on my surgeon’s part. I had my first surgery in New Jersey nine years ago, when O.R. records and notes were not put into computers. These O.R. notes contain all of the aforementioned information and are not difficult to obtain from the hospital in New Jersey (doctors request records all the time…), but someone working for my surgeon’s staff (who will remain anonymous out of the very little respect that I have left) decided not to do their job and did not obtain the records, despite my physician’s common request. This task is standard protocol for any hardware surgery.
So three hours of near panic and lots of pain later and my surgeon called the surgery off. If he continued with the surgery without having the notes, it puts me at high risk for infection and quite frankly, he likely would have opened me up and found that he did not have the correct tools to remove the hardware. It would be pointless.
My mother went apeshit (understandably so) and I shut down and went silent. Dr. J went on to say how we could reschedule and how sorry he was, on and on and on, but he was not understanding that every week they push back this procedure, the longer it is going to take for me to recover (so long that I may not be able to return for Spring semester) and the more sick I get, putting me at more risk of organ inflammation and other complications (not to mention more pain and fatigue).
Nurse K stepped in and basically ripped my surgeon a new one, explaining what it means to have an aggressive chronic illness and be forced off medication, and the implications that can have on my body.
I told him he has one week to reschedule (aiming for Friday), or I will call this whole thing off and possibly find another surgeon. The whole thing is completely unacceptable. The entire surgical and nursing staff was appalled that my surgery was called off for a fifth time, or that I’ve even had this many cancellations.
So we left
I came home, took pain meds, and slept literally for the entire day.
My mum took a xanax and did the same.
We’re drained and I am beginning to have second thoughts. I know my body needs this rod out — I can feel it — but doubt is starting to replace confidence.
Some people pray, some people send positive thoughts or energy, some people talk to God or another source of religious guidance, some people do not seek any type of guidance at all. I talk to my grandmother. She passed away after being seriously ill for over fifteen years due to a botched surgery that caused chronic illness after chronic illness that ultimately lead to the end of her life. No one else in my family knew suffering like she did. I feel a connection with her now that I didn’t while she was alive, I feel her with me. I remember her strength and feel that same strength within me. Until you experience it, I’m not sure you can really understand it, but I know she is with me and it is truly my greatest comfort through this ordeal.
So as I was laying in bed last night, I asked her to be with me through this. To guide me, protect me, and let me know what the right thing to do is.
And then it was canceled. Again.
Call me superstitious, call me anxious, call me crazy, whatever you want, but I am starting to feel like my life is one sick cosmic joke. Is this a sign not to have surgery? I don’t understand anymore. I don’t believe in luck. The odds have always been against me but rather than resenting it, my friends and I joke about it.
But I’m not joking tonight. Tonight I’m not laughing, tonight I just want to be healthy.
I will update when I know if I am having the surgery on Friday. The queue will still continue as planned, but I need a break from everything and probably will only be on facebook for the next few days. A big thank you to my amazing friends and family for the words of encouragement and love, and all of the incredibly sweet messages I’ve received here online. The amount of kindness I’ve encountered lately gives me hope. Your words stay with me :)
I hope everyone is content and feeling better than I am tonight,
Wishing everyone well,